Illinois Life Span Finding Resources for Transition Statewide & Statelong in Illinois

1. Illinois Life Span Finding Resources for Transition Statewide & Statelong in Illinois With help from the Family to Family Health Information & Education Center of The Arc of Illinois

2. The Family to Family Health Information & Education Center • Who is F2F? • Serve families and friends of children and youth up to age 21 who have special health care needs, disabilities and chronic illnesses. • About 14% of children under 18 in the US – or 10.8 million children – are estimated to have special health care needs.* • About 1 in 5 families includes a child/children with special health care needs.* From the National Survey of Children with Special Health Care Needs Chartbook 2005/2006 – US Dept. of Health and Human Services, Health Resources and Services Administration • Employees of F2F are parents of children or adults with special health care needs.

3. The Family to Family Health Information & Education Center • What is F2F? • A free service for families of children and youth with special needs, funded by the U.S. Health Resources and Services Administration (HRSA) and The Arc of Illinois. • A collaborative project with Family Voices of Illinois, we are part of a national network speaking on behalf of children and youth with special healthcare needs.

4. Why is there a need for F2F HIC’s? • Families often face ongoing and complex medical concerns. • F2F’s are there to help when families don’t know where to look for resources or information. • The “system” changes frequently and families need a place to turn for reliable and up-to-date information.

5. A look at CYSHCN in Illinois

6. How is information provided? • Call us! • Attend one of our trainings. • Check out the F2F website at www.familyvoicesillinois.org

7. This is our website!

8. We put resources together based on the questions we hear.

9. F2F Resources that may be helpful to families/professionals assisting youth in transition Family Manual Transition to Employment and Adult Services for Youth with Developmental Disabilities in Illinois

10. Our Links section is a great resource!

11. Transition Resources Links . . .

12. Our section on Health Insurance . . .

13. Announcing the Updated Family Manual on Transition! • First released in 2005 • Focuses on youth with developmental disabilities • Revised version includes • Updated system information • Contributions from outside resources • Appendix that contains useful tables and forms

14. Updated Family Manual on Transition • The Family Manual is divided into four sections: • Special Education and Transition Planning • The World of Adult Services/Supports • Health Insurance and Employment • Services and Supports, Options and Trends

15. Information available in the Family Manual includes . . . • When to complete a PUNS Form • What is Post-Secondary Education and How Can Students with Developmental Disabilities Participate? • What is a Waiver and Why is it Important? • Agency Website and Application Overview • Making Sense of Portable Medical Record Options/Devices/Services

16. Key points to keep in mind as you read the Family Manual: • Transition is a process, not an event. • Think of transition as a tree, not a tunnel. There is no singular, correct path to follow. Each individual and family will have to choose the branch or path that works best for them. • No government program can ever address all of a person’s needs. • Transition impacts the entire family. • Youth and adults with developmental disabilities can work. Maintain this expectation. Make employment/work skills a priority in each IEP and in your home. • Youth and families must have back-up plans for transition. No one can assume that they will be “selected” from PUNS to receive funding for adult services. • Families may need to do a ”cost-benefit analysis” focused on family survival needs (maintaining employment and health insurance) versus what may be required when their young adult “ages out” of the school system as part of transition planning.

17. You will need to consult the appropriate professionals. • The Family Manual is a general guide, developed to address the common questions of families in transition. It is not intended to take the place of qualified professional services. We recognize that each individual has unique gifts and challenges and therefore, will need an individualized process for transition. ALWAYS CONSULT THE APPROPRIATE QUALIFIED PROFESSIONALS!

18. More Transition Resource Links . . . • Being a Healthy Adult: How to Advocate for Your Health - The Elizabeth M. Boggs Center on Developmental Disabilities - The purpose of this guide is to teach young adults with disabilities how to become strong self-advocates for their own health and health care. Availble in pdf and mp3 audio file formats. Also available in Spanish. • Parent Brief: What Does Health Have To Do With Transition? Everything! - From NCSET and Pacer Center. This Parent Brief provides information on the benefits of and strategies for including health in the Individualized Education Program (IEP) process. • Talking with Your Doctor and Other Health Care Professionals - The Massachusetts Disability Employment Initiative has launched a new website called "Talking with Your Doctor and Other Healthcare Professionals". This site is geared towards helping youth feel more comfortable talking to their healthcare provider.

19. Health Care Reform – Why is it important for families of CYSHCN in transition? • Health care and insurance coverage are important issues to cover in transition. • They are important to include in work with youth at home and in the IEP. • Health Care Reform is important because the changes will impact the lives of youth with special health care needs and their families.

20. Health Care Reform – Why is it important for families of CYSHCN in transition? • No exclusions for pre-existing conditions for children under 19.

21. Health Care Reform – Why is it important for families of CYSHCN in transition? • No lifetime caps.

22. Health Care Reform – Why is it important for families of CYSHCN in transition? • Options for health care coverage are increased with the possibility of remaining on parental insurance policies to age 26.

23. More Health Care Reform Information Resources • www.healthcare.gov • Your Health Care Explained for • Families with Children • Individuals • People with Disabilities • Seniors • Young Adults • Employers • Find Insurance Options • www.familiesusa.org • Issue Areas/Resources include • Medicaid • Medicare • Advocacy Tools • Private Insurance • www.healthreform.kff.org • Health Reform Hits Main Street video

24. Thank You! • Thank you for your interest in the Family to Family Health Information & Education Center! • Please contact us if we can be of service at any time!